The Dreaded Waiting Lists and NOEWAIT

Husband spoke to his brother tonight about their mother's housing and financial situation, and how Bil complicates her elder care situation.

This brings up the dreaded Waiting List.

Everyone who has family with developmental disabilities knows what The Waiting List is.  That's the list your family member gets on...and then rots and rots and rots.  Because in fact, The Waiting List is a fiction.  These lists are years long...we are talking (in some instances) 20 years or more.  This is how you end up with widows in their 80's taking care of their disabled 50 and 60 something sons and daughters.  Or, with family members not free to move where they may want to live.  Or the disabled member being unable to move to where they may have to be because that is where the rest of their family is.

I have just found about about an organization called NOEWAIT:  National Organization to End the Waitlists.  I haven't had a chance to investigate the website yet, to see if this organization may be something worthwhile for us to join.

This organization has a video on YouTube. (I have not reviewed it yet.)

To quote from NOEWAIT's YahooGroup:

Waitlists are a national disgrace. Some states have over 100,000 individuals with extreme needs waiting for services. Yet, individuals are fighting for services on a person-by-person, state-by-state basis.

"Outsiders"  may be puzzled by this.  Families of those "in the system", as my brother in law is, know exactly what this means.

It certainly sounds good on the surface.  Hopefully this weekend we will be able to learn more about it.

High School Commencements and Aspergers Syndrome

A Facebook friend (and person I went to high school and college with, but haven't seen since) posted this link to my high school's 2010 commencement address. 

Funny, isn't it?  So what the heck does this has to do with autism?


It is because I met the family of this years valedictorian at our local high school many years ago.  There are three children, all of whom are graduating this year.  There is the youngest son, a genius and musical talent (graduating early), the middle son who is in the middle of all this (and graduating "on time), and the daughter, the oldest, who has Aspergers Syndrome and is graduating "older".  Just like my son's friend.

This is a good family and good people.

Siblings can have a rough time of it and the "youngest son", who is the valedictorian, found this out years ago.  He will have his challenges and a sense of humor, like Gene Weingarten's, will serve him well.

I hope he makes a good speech, not a typical "generic" speech.   He certainly doesn't have to be funny. Gene Weingarten didn't win the 2010 Pulitzer Prize for being funny.  He won it for a very scary and sobering article.
I know this young man is going to have a very different take on this world, just like Gene does.  I hope one day I can find a transcript of his commencement speech.

 I hope that he, and his neurotypical sibling. fare well as they go out into this world. Just like I hope my son's friend (who I've blogged about recently) who will be in the same graduation today, will succeed in his going out into the wider world.

Driving in the Age of Autism

 Can people with autism drive?

In many cases, among them Bil's, the straight and honest answer is no.  However, some "high functioning" individuals with Aspergers Syndrome, for example, can and do learn to drive.

One of these individuals is a friend of my son's, who I have written about a couple of times before.

The plan right now is for this young man, who will be going to college for a one year program, out of town, to live in a dorm but come home on weekends.

Come home on weekends.  In a car. By driving himself.

This sounds like a no brainer but for those with children on the spectrum, this driving thing is no small thing.  I am no expert on this, but my guess is that this is because  driving is a very complex skill to learn and master.  You may not think so if you, gentle reader, has been driving for years.  But think back to when you were learning. (If you have a teenaged child, remembering this is easy!)   Did it ever feel like you would ever be able to brake without trying to catapult all the occupants of the car through the windshield?  How about watching the road and the speedometer at the same time?  And judging distances?  Parking?  Not running up on the curb every time you tried to make a turn?

People with autism tend to think visually.  They have to learn skills broken down in to small parts, one at a time.  And, they won't translate skills in one context into another. For example, my brother in law Bil could learn to put a key into his lock at home. But when it came to locking the door of his brother's house, well that was a whole new set of circumstances.

But I digress....back to the friend.

His parents had gotten private lessons for him and the instructor was not sure he would ever be able to pass the driving test.  But he did. And, our next door neighbor (who has an adult son....let's just say he understands, too), even sold this young man a car.

So he's set, but his Mom is very nervous...and to be honest, I am also.  I was with my son too but this is something different.  Will his reaction times be good enough?  Will he be able to judge distance, or make other split section decisions?  His life can and will depend on it.

So far, he drives alone and my son follows in his car.  He is not permitted to have passengers for the first 6 months and this is similar to what he gave our son as a condition when he got his license. But our son got his license when still a teen. (An older teen, but a teen.)  This young man is an adult.  So we will have to see what happens.

All parents hold their breaths as their children achieve independence.

The parents of a child with autism pray for his or her independence...and hold their breaths twice as hard.

College in the Age of Autism

College.  This is a very big step for a young man with Aspergers Syndrome.  At one time, as I briefly mentioned in my last post, it was near impossible.  But for a friend of my son's who will graduate high school next week...well, we will see.  My fingers are so tightly crossed they are about to break.

This college is about 2 hours from where we live.  Close enough to come home on weekends, but he will have to live in a dorm.

Did you live in a dorm while in college?  Do you remember the noise, the smells, the chaos?  And, having to deal with a room mate?  It was the luck of the draw, and sometimes it was a big period of adjustment.

For a person with Aspergers Syndrome having a roommate can be a deal breaker. Never mind the noise, the smells, the chaos.

One possible solution is to get a private dorm room.

My son's friend's Mom told me today they haven't heard from the college yet about him getting his own room. 

Do they have a plan B?  It isn't my place to ask.  I'm sure they do.  It is one of the first things parents of a child on the spectrum learn.  They learn how to have a plan B-and plans C, D, E.....


I don't know what other supports the friend will have.  It isn't my business to ask either.

However, as this develops, I will post my observations-in a very general way. 

Good luck, friend.

Bittersweet Graduation

My son's friend had his graduation party today.  Friend, who has Aspergers Syndrome, graduated after two years as a senior and is on his way to college - for a one year certificate program - but he is going to be in a dorm.  More on that in another post.

We were honored to be invited (not just our son); this young man has spent a lot of hours at our house.  Friend's mom confided in me that there was so much food because they had invited a number of people who never showed up.

Sounds familiar, doesn't it.

But there were relatives there, and all had a good time.

So did we.  We were honored to attend.

So why bittersweet?  Because many years ago Bil tried to go to college.  He didn't make it very far.  There were no programs for young adults on the spectrum.  He had to sink or swim and unfortunately he....sunk.

May this young man swim.  We wish him all the best.

Funding Cuts

While we were visiting at my mil (and Bil's) home over the Memorial Day weekend, my mil mentioned a letter she had gotten about possible Medicaid cuts.

New York isn't the only state where Medicaid cuts are being proposed.

I want to mention something here about Medicaid.

Too many people think of Medicaid as a program that saavy low income criminals take advantage of, living high off the hog while we middle class workers subsidize their lazy,sponging off the taxpayer lives.

Apart from this (I won't argue if it is or is not a stereotype or a truth) you may not be aware that a lot of people with disabilities depend on Medicaid as a lifeline.  It sometimes isn't much of one, and the system is very broken.

But, without going on Medicaid, as an example, services for developmentally disabled individuals are very hard to come by.

Our introduction to this was about 9 years ago, when we naively contacted the local "ARC" (once called the Association for Retarded Children, this organization has changed its name more than once to keep up with the times - the word "Retarded" being generally considered now in a very negative light) to get a starting point as far as seeing what services might be available for Bil.

At this point in time Bil's parents had never sought to get Bil qualified for Medicaid, considering it a form of "welfare" and not trusting "the government".

What we found out is that the various social services organizations would not provide any services for Bil unless he was on Medicaid.  The way (right or wrong) the system was set up, they could not give him services, even if we paid for them out of our own pockets.

After my father in law died we discovered that Bil was the only person working in his sheltered workshop who was not on Medicaid!

The Medicaid discussion is too complex to talk about in one blog entry, and I am no expert.  But I will say, I wish Bil's parents (my in laws) had taken the steps to get him on Medicaid.  Budgets were already being cut when we made the effort, and it took years.  And now, he may be in danger of losing his medicaid service coordination.

The Medicaid Service Coordination that has gotten him dental services, for one thing.  Bil hadn't seen a dentist for years, and his teeth were in bad shape. 

I will write more about Medicaid Service Coordination at a later date.  And about the trials and tribulations of getting medical and dental care for an individual with autism.  It may not be right away, but one day....

Questions with No Answers-So Where Do You Turn?

My recent visit, with husband, to Bil and my mother in law was most interesting.

Right now I have one question that I don't have an answer to. 

Are there any financial advisors out there that truly want to help people?  If there are, I would dearly love to find you.

I'll try to put this briefly.  (that's hard, for me!)

Bil has worked for many years in a sheltered workshop environment, and saved his money.

Some years ago someone at a bank talked my mil into buying a variable annuity for him.  He was only in his 40's when she made this purchase for him.

Then, several years later, a financial advisor talked her into exchanging that annuity for another variable annuity.

Now that person isn't in the business any more.  Now, the present one wants her to surrender the annuity and put the proceeds into a brokerage acount.  He says they will use only conservative investments.

It would seem this annuity has lost big in the stock market.  Planner #3 says the annuity has limited funds, and there are heavy fees involved.  It's no wonder.  I know little about this product and my research reveals it is a complex product that may not have been a suitable investment for a man with autism.  Instead, she trusted someone at her bank to tell her what was best.  Like she trusted the second advisor, who left the field soon after selling her the second annuity (I believe she went to work for a radio station). And now planner #3, who has filled the void-well maybe he has Bil's best interests at heart.

Or maybe he just wants to make a buck too. Although one thing in his favor is, he says he is fee only - so I may have some confidence that this man isn't just trying to make another sale for the sake of commission.

My husband talked to him today over the phone, at the request of my mil.

So now this burden shifts to us...where in a way it should be.  So....

How do we know what will be best for Bil?  Where do you get information like this? 

All I know is-he has lost money he will need to live from one day, and I don't know how to do what is best for him now.

Now what?  I don't think the NY Insurance Department will be of any help.  But where are all their laws they have to protect consumers?  Where were they for Bil?  For Bil, who has no idea what has happened with his money.

Would you like some of my Orange Juice?

Yesterday was Memorial Day.  My husband, mil, Bil and I got into the car and visited a couple of cemetaries after having breakfast.  Part of Bil's breakfast was a container of orange juice.  He didn't finish it and took it with him.

The first cemetary was just a few minutes away from home (my father in law's grave) but the other one was over 1/2 hour away.

By the time we got done, it was already quite warm.  On the way home my mother in law started wishing for a "large glass of ice cold water."  She repeated the request.  I offered to stop at the next exit and get her something to drink, perhaps buy her a container of cold bottled water.  She turned me down and asked that we continue home.

My mother in law was sitting in the front passenger seat.  Bil was in the back.

Hesitantly, Bil started to speak.  I don't remember the exact words now but it was something like "Mom, would you like some of my orange juice?"

Keep in mind that Bil has autism.  There is a belief among those who aren't familiar with people with autism that people with autism don't care about others.  This isn't true at all.  There are several difficulties involved and I have made comments in this blog that Bil many time treats his mother like some kind of caretaking machine. I will admit that.  But, I have to tell you, this was the most concrete sign that Bil had ever given that he cared about his mother's discomfort.

(P.S. she turned the orange juice down. As soon as we got back to her house I ran, got ice, and poured her a glass of ice cold water for her and one for me.  It sure was good going down.)